Oh how I wish Dr. Sunita Puri has written That Good Night when I was a resident at the Univ. of IA Hosp. & Clinics back in 1979. It grew out of my need to answer a question. When returning to the hospital after a weekend often patients with life limiting conditions had been discharged and I wondered what would happen to them. That led me to wonder with others and ensued our effort to create a home care hospice in the early 1980’s when hospice was a new idea in this country. As I immersed myself in her memories, my own memories came flooding back. When I read that the American Board of Medical Specialties didn’t recognize hospice and palliative medicine as s distinct medical sub-specialty until 2006 a lot of my questions began to make sense. Seeing from behind her eyes helped me to see how difficult modern medicine is for people whose whole identity is to fix things. At some level I knew this, but at another level it seemed unreal. On my first night as a resident chaplain I distinctly remember the terror I felt as my pager went off and I headed down the long darkened hall toward what I hoped was the right direction. At the end of the hall I could see the shape of someone and I imagined it to be the Spirit and found myself mentally shouting “I will had you what I can reach.” This moment of truth, for someone short enough to spend a lot of time asking people to reach things for me, freed me to enter into the chaos that awaited me. As long as I truly handed to those in need whatever I could reach, I could fail and still come out OK. Dr. Puri says this in so many eloquent ways there would be no way to list them all. As medical options become ever more complex, the questions of what should be done become ever more difficult. I hope that all people walking the paths with patients might find this book and bring her wisdom into their lives. It is interesting that her whole lifetime is the very length of time I have been invited to share the struggles of patients and their families. In a way I feel like Simeon in Luke’s gospel saying “Master, now you are dismissing your servant in peace, according to your word: for my eyes have seen your salvation, which you have prepared in the presence on all people, a light for revelation to the (caregivers) Gentiles and for glory to your people Israel.” Luke 2: 29-32.
Konrad H. Jarausch has given us the fruit of his labors in his attempt to share how ordinary Germans experienced the 20th century in his book Broken Lives. It was described as “The gripping stories of ordinary Germans who lived through World War II, the Holocaust, and Cold War partition―but also recovery, reunification, and rehabilitation.” I went in search to see if he could help me deal with my sense that we are standing on the edge of a cliff these days in the choices we are either making or not making. My question is, how a culture could be drawn into a systemic series of death dealing choices? He used the diaries, documents and much more to weave a story of ordinary and extraordinary people reacting to the hardships and humiliations of WW1. He then composes an engrossing story of how men, women and children made sense of their experiences by quoting from those recovered texts.
On page 280“ I found this quote that seems to speak to my search and question: “Still in high school, Ursula Mahlendorf “shared with my classmates a fundamental distrust of all adults” who were responsible for the German catastrophe. ln heated exchanges with her favorite teacher, “I accused his whole generation I articulated my age groups feeling of having been shortchanged by our elders and of being berated for what they had failed to teach us.” Similarly, theology student Erich Helmer voiced his cohort’s “search for answers to the questions: What can still be believed? What is solid after the ground of reality has and is continuing to cave in everywhere?” I sense our youth in their marches, voter registration drives and much more are demanding to be heard now. We too now have to choose wisely so not to repeat the 20th century mistakes that brought so much suffering.
I invite you to read this book. It could help you to reflect on things in a deeper way. It must have taken the author many years to discover all these documents let alone construct the story in such a way to share the humanity of those whose worlds he shares with us. But somehow he seems to perceive that we need these insights NOW.
What Matters in the End
There are many kinds of studies; the most powerful one, for me, was the study that Jennifer Temel, a Massachusetts General Hospital physician, did — led, which took care of stage four lung cancer patients. They lived only, on average, 11 months. It’s a terminal condition; no one lived past about three years. And what she did was, half of the group were randomized to get the usual oncology care, and the other half were randomized to get the usual oncology care plus a palliative care clinician, physician, to see them early in the course of their illness. And so it was sort of a radical idea — see them from the very beginning.
And what — the group who saw the palliative care clinicians from the very beginning did end up stopping their chemotherapy. They were 50 percent less likely to be on chemotherapy in their last three months of life. They were 90 percent less likely to be on the chemotherapy in their last two weeks of life. They were less likely to get surgery towards the end. They had one-third lower costs. They started hospice sooner. They spent more time out of the hospital. They were less likely to die in the hospital or die in the ICU. And the kicker was that they not only had overall less suffering, they lived 25 percent longer.
The Last Lecture by Randy Pausch, is a guide on how to live in the now. He and his wife face his inevitable death with courage while all the while accepting their limits and the support of others. The short chapters bring deep glimpses of truth lived fully.
Tuesdays with Morrie by Mitch Albom, Doubleday, 1997.
I have been serving people in their process of living until they die for many years now, and this wonderful little book touches my heart. Morrie, a professor; Mitch a former student; come together in this powerful story of living fully until the end of a full life. We are let in on the process of this reconnection of lives in a way that gives an example of how rich such a risk can be for all concerned. Morrie taught with his life. He also taught with his death. This is a book to curl up with on a cold winter day, because it will warm your heart and soul through and through.